Wednesday, October 26, 2005

More pictures of the Fall changes to the trees. Most of the leaves were blown off during the Nor'easter. The high temperature today is 49 degrees with a low near freezing. Yuck. No snow yet though, for those of you who asked. Good thing I have new coat to warm my bones. I didn't do much today but sleep. I was up late doing laundry and (shocking) watching the World Series. When I did settle down it was three and I was finally graced by sleep at 4am. Needless to say, it was probably a result of too much caffeine. Started a new chick lit book, mindless enough to rest my brain but to keep me interested. off to read it...

Wow! I didn't realize it had been so long since I had blogged, nor did I realize that people were actually reading it on a regular basis- great. This week has been uneventful, just trying to cope with the stomach and sadness as it is evident that I won't be able to make it to UCF Homecoming in Orlando as I had intended. Dialysis require upfront $ for the 20% that Medicare doesn't cover upfront, I have to get a fistula, venous access surgery, for dialysis during this time period, and its flu season: a plane during flu season is not the best place to be for someone so immunocompromised such as myself. BUT my main reason, no pun intended, is my butt, and my fear, which is completely rational in my humble opinion, that I'm going to relapse and prolapse and have a colon emergency or embarassing situation. I stopped taking the vancomycin and probiotic therapy for the colon infection and things have actually been a thousand times better. It was either that or my mom's magic pancakes that she made me on Sunday that created such improvement. I blew off some steam on Friday with a trip to Old Navy, I needed some shirts that weren't stained by my shakiness or dialysis. I don't want to look like a scum bag, even if its just me that sees my image in the mirror. What is it about shopping that always makes me feel better? I had saved some money,but since I am not going... I haven't talked to my friend Jenn, who is likely in Boston spending time with her much ailing Father, please keep him in your prayers beside me. Today, Carrie and I went out to dinner at Bugaboo Creek Steak House- I left my Coach Signature Crusher hat there like a dumb ass so I'll have to get it tomorrow. I have been on a Diet Mountain Dew Kick since Diet Coke has too much phospherous in it and my labs get thrown off. It gave me the energy today to get what to me seems like a lot accomplished. I can't tell you the last time I was brave enough to actually eat in a restaurant- take out- yes, so that I could be close to my own toilet, if you know what I mean. So I borrowed some of Hooker's ativan last night to help with sleep. It's amazing what a good night sleep will do for you. I'll have to see the doctor to reevaluate my sleep aids to get back in a normal swing of things- three hours at dialysis just isn't enough. Even that has been restricted since the old man they called Herbie has been praying very loudly the ENTIRE time I am there. I was going to ask (politely) if one of the nurses could ask him to pray to himself, but just when I was about to- the power went OUT! This was before the Nor'easter, so there was no weather related reason that caused the outage. I decided that it was God's way of telling me to stop being such a jerk and give this guy some peace. I guess I'll just have to start bringing headphones. I guess I could use a little prayer myself. But tonight I'll be thinking of my Friends in South Florida, who are suffering, again, from a hurricane.

Tuesday, October 18, 2005

Carrie and I tried to take some Fall pictures of the pets bu they weren't so cooperative, except for the cat who wanted to be in every picture. My main problem is the shakes causing blurriness in the photos- editing doesn't really help the image distortion. Any tips-amateur photogs?

I have had so much time on my hands that I have at least not wasted the opportunity to watch the Fall unfold before me. It is ironic to think that the beauty of these trees is in their time of death. I did very little today. While at dialysis, an old senile man prayed the Hail Mary over and over outloud for two and a half solid hours. My stomach was doing ok, and then exploded and I left dialysis early- they were out of toilet paper and I didn't want to risk it. I am trying to accomplish at least one goal a day so that I can mentally feel like I am prodictive and contributing something meaningful to the day since I get up and about around 4 in the afternoon these days. It's embarassing to say. So my accomplishments today were cleaning the bathroom, vacuuming, and setting up dialysis for my Florida trip. I have to decide if I am going to take the second part of Fall classes- I signed up for one. Right now, $ is up in the air but most of all my stomach. I don't know if I should just wait until the winter since I would have to miss a couple classes due to my Homecoming trip. I guess I have a lot to think about... any advice?

Sunday, October 16, 2005

It's a gloomy day in Plymouth, although it's not raining. We had 9 solid days of rain and a lot of local towns are flooded. I'm not so worried about it here since we live on a big hill with no water sources in the region besides the ocean which is two miles away. It's very windy today. The cat tried to sit by the window and got blown down. I am not mtoivated to do anything today, which I keep telling myself is okay, but makes me feel like a loser. I probably should shower and vacuum, but I'd rather go back to bed, even though I did just get up like an hour ago. Even Carrie got up and out and went to get her nails done and went to the mall. I wasn't even motivated for that- I kind of wish it was raining. Instead, I am watching a TLC special on midgets, I mean "little people" to be politically correct.

Saturday, October 15, 2005

I finally made it over to my brother Chris and his wife Tiggy's house to see baby Jude Dylan above. He is adorable and it has been so long since I have held a baby. My brother is totally pumped to be a dad and I don't think the reality of it all has quite set in fully. Tiggy looks good for giving birth just a week ago. Chris told me that when they got in the car to go to the hospital, when they turned on the radio "hey Jude" was playing. What a coincidence! My brother is a big Beatles fan and is what I would describe as an old soul, with this in mind, it was also ironic that baby Jude shares John Lennon's birthday. I am hopeful that I will be able to watch this baby grow up and that I will be a good aunt to him. I have a nephew!

Friday, October 14, 2005

It has been raining here for more than a week. I am home from the hospital and am physically recovered from the colonoscopies, though mentally, its a different story. I still haven't been to see my nephew because I have been under this horrible weather, but I hope I'll be up to it this weekend. I have custody of my mom's digital camera so I'll be able to post some picutres of the boy. My stomach is a little better, though it still has flare ups and episodes. My sleeping pattern is skewed because of the weird hospital schedule. The only thing I have accomplished this week was a haircut- I cut a little fringe of bangs, which was like most of my actions, was completely impulsive and random, but the results are not bad. I'll post a picutre of them as soon as I look good enough to be seen on the web. Unfortunately, my friend Jenn is back from her world travels and adventurous life in Espana. Her dad took a turn for the worse- though she seems ready to accept that he is likely succombing to the wrath of cancer, her family seems less likely to see the end of him and more like to be spending the moment in denial. I think tha tmakes things worse later on. But nonetheless, I keep the family in my prayers and don't give up faith because God knows I've been in the position where recovery seems impossible as well and things have turned out for the best. You never know where the soul can summon strenght from in moments of challenge. I wish it was easier to take my own advice sometimes, isntead of me getting caught up in my own pity party.

Wednesday, October 12, 2005

I have a lot to catch up on but my stomach is currently on the blink so I will just write the highlights of the past couple of days.1. My nephew Jude Dylan was born on Saturday October 8th. I can't wait to see him but I have been under the weather still.2. I am out of the hospital, for now. Currently still experiencing symptoms so we'll see what happens haven't really been leaving the house except for dialysis. Luckily, its been rainy so I'm not missing much.3. I had two colonoscopies last week and they didn't sedate me nearly as much as I needed so I have been very uncomfortable. I had an accident on the way to the pot and skidded on my bathroom floor so my knee is swollen. Could it get much worse?On a happy note, Courtney got me some ruby slippers to boost my spirits- that did the trick as she drove me home from the clink and shared the good newsw that she and GW are expecting a baby girl in March. Yippee for them.

Wednesday, October 05, 2005

It happened again. I write all about my colonoscopy and the dial up connection dies before the blog posts. SO I'll try this again... It started at 11:30pm last night when the hospital pharmacy finally delivered the Go Lytely preparation I was to drink, A whole gallon of the shit. I was chugging away- at a pretty good pace, hey I did learn something in college, but by 4am I was exhausted. At 5am the nurse woke me up to clean me out from the other end via Fleet method. I was miserable and nervous. I got no sleep. I went to the endoscopy suite at about 10am, missed breakfast of course. They tried to dope me up but I require a lot of drugs so the effects were minimal and I still felt hose probing my ars. They only good thing was that I could see my innards on the tv monitor. They didn't find anything unsual, which I guess I was kind of looking forward to- they did take several pinch biopsies. I was full of air and continued to expel it the rest of the afternoon.My mom brought Detroit for a visit this evening, which boosted my spirits. As did the care package/pyjamagram I got from the Rushforths. It was very thoughtful. Sun designed and Duckdesigned pjs- much better than flowers and practical for a hospital girl like myself. I am hoping to get home soon. I have dialysis tomorrow I believe. I cheated and had a hot dog from the cafeteria tonight. Hot dogs are not on the approved diet list due to the amount of phospherous. I took some extra pills to try to balance the slip up. I have been drinking Diet Mountain Dew again, which is better than Diet Coke since dark soda poses a phospherous problem too. I need a manicure and a new pair of shoes. Most of all I need a good night's sleep. Mymuscles are stiff and crampy, usually a sign of kidney malfunction, so I asked for some pain meds. They really didn't do much for me. I took a walk around the hospital floor. If you walk around in a circle 24 times, it equals a mile. It is critical for rehab for transplant patients, I basically just do it to prevent pneumonia and to avoid blood clots which can grow from laying in bed too much. More tomorrow...

Monday, October 03, 2005

Once again, my blog of yesterday and the events that were erased the day before disappeared in my attempt to publish. In summary: the doctors have tried a new drug IVIG, intravenous immunoglobulin, to bump up my immune system which is nonexistant from the antirejection drugs. They are still not sure what the route is to cure this stomach issue. I had a consult with the vascular surgeon to create a fistula for dialysis access. I had a GI consult and it looks like tomorrow I will have some sort of scope shoved up my ass. Dialysis was particularly rough today- they are very aggressive here and took off 6.something kilos (1 kilo=2.2lbs). They won't disconnect you from the machine so I had to use a bed pan twice. I thought I was going to fall out of the bed because I was weak from the treatment trying to balance on the pot. I had to then wait a full hour for transport to come bring me to my room. I actually would have waited longer but the secretary, a very nice lady, decided to take me herself. She then asked if she could pray for me- not one to turn down a blessing she prayed for me and told me that I had to be strong to get through this because god had plans for me. That was meaningful to hear from a stranger and then I tried to stay awake for the soaps. No good- I zonked out. I talked to my mom and she put the dog on the phone, which is pathetic but exemplary of how terribly I miss the dog. No talk of when I'll get home- soon I hope.

"Wave Of Mutilation" - The Pixies: "1. Wave Of Mutilation - The Pixies This is reminiscent of my youth- the summer with Fortini and the infamous TIger B- when I thought I was too big for my britches, now I am jst an old lady"

About Me

Welcome to the blog of Dr. Jill Balboni. (It took a lot of work to earn that title!) This blog is my very personal account of life as I know it, or rather how to live life each day in celebration, despite what the world has tossed you way. For me,this means getting up every morning and coping with the challenges of cystic fibrosis,a double lung transplant, diabetes, kidney transplant, etc. These are not complaints, but rather components. It is all a matter of framing! It's about my family, my friends, my dog, and random musings that strike me alng the way!
We are all saddled with our own "stuff," let me help you make sense of it, organize it and integrate it into your life. There is so much to learn. I know that I am not the expert in everything, but I probably have a strategy to finding the solution to your problem, the answer to your question, or I know where to go to get help.
Just what the doctor ordered!